What’s Ectrodactyly?

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Ectrodactyly is a rare genetic condition that causes malformations of the hands and/or feet, often resulting in missing or fused fingers or toes. While there are treatments available, the condition can affect a person’s physical appearance and lead to social stigma. It can also be part of a syndrome, such as EEC, which requires medical interventions and therapy.

Ectrodactyly is a birth defect that causes malformations of the hands and/or feet. In many cases, the middle finger or middle finger is missing, and the two fingers or toes to the right and left of the missing finger are fused together, although there may be other deformities. This has led to the condition called “lobster claw syndrome,” but many people who have this condition find the term extremely disrespectful.

Currently, there are several treatments that can normalize the appearance of your hands, but they won’t work in exactly the same way as regularly trained hands. Early physical and occupational therapy can help people adjust and learn to write, pick things up, and be fully functional. The stigma of the condition remains, however, as the hands don’t look normal and some people with it use prosthetic hands to avoid the gazes of others.

Ectrodactyly is relatively rare, occurring about once in 90,000 births. It has several types and all of them are genetic. Those who have it or have children with the condition are at higher risk of passing it on to future children.

The most common type is specifically linked to the mutation of the seventh chromosome. Geneticists have found that the condition occurs in both human and insect populations directly due to the mutated chromosome. So far, there is no way to prevent the chromosome mutation, which can be inherited from both parents.

This condition can be present on its own or it can be part of a series of birth defects. Hand deformation alone is unlikely to affect a person’s health, but as part of a syndrome, such as ectrodactyly, ectodermal dysplasia-cleft (EEC) syndrome, health can be significantly affected.

In EEC, the hand deformity is accompanied by cleft palate and malformation of the sweat glands. Medical interventions are needed to help preserve skin that suffers from a lack of sweat glands and becomes fragile. Surgical repair is also needed on the palate. Those undergoing repairs often require extensive speech therapy and physical therapy.




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